PT - JOURNAL ARTICLE AU - Michal Shteinberg AU - Jeanette Boyd AU - Bridgette Harris AU - Pieter Goemmine AU - Amelia Shoemark AU - Josje Altenburg AU - Thomas Ruddy AU - Tobias Welte AU - Francesco Blasi AU - Barbara Crossley AU - Stefano Aliberti AU - Ernie Lloyd AU - Eva Polverino AU - James Chalmers TI - What’s important for people with NTM? An EMBARC-ELF patient survey AID - 10.1183/13993003.congress-2020.3338 DP - 2020 Sep 07 TA - European Respiratory Journal PG - 3338 VI - 56 IP - suppl 64 4099 - http://erj.ersjournals.com/content/56/suppl_64/3338.short 4100 - http://erj.ersjournals.com/content/56/suppl_64/3338.full SO - Eur Respir J2020 Sep 07; 56 AB - Introduction: The diagnosis and decision to treat NTM-pd are often challenging. The treatment is also lengthy, and the drugs used may be associated with adverse effects. We aimed to find out patients’ experiences and challenges regarding NTM-pd diagnosis and treatment.Methods: We conducted an online survey among people who self- identified as having bronchiectasis and/or NTM-pd. The survey was led by EMBARC and developed in collaboration with the European Lung Foundation (ELF) and their bronchiectasis patient advisory group.Results: 347 respondents from 33 countries were eligible for data analysis, 85% were female and 51% were between 51 and 70 years of age. The level of awareness of NTM before taking the survey was 60%; with 65% of respondents having been tested. Of the 152 respondents who had experience of NTM, the most common species (60%) was Mycobacterium avium/intracellulare.Of 108 people who received treatment for NTM-pd, only 35% successfully completed treatment. 37% were still taking treatment and 28% had stopped without treatment success. Cough, feeling tired, and anxietywere rated most troublesome.Respondents highlighted the impact of side effects, anxiety around their condition, and the impact on their quality of life. The top issues graded by respondents as needing attention to improve management of NTM-pd were: ‘Finding methods to prevent NTM infection’, ‘Finding drugs that have fewer side effects’ and ‘Finding drugs that are more effective in treating NTM-pd’. Many respondents highlighted the need to raise awareness of NTM-pd among all healthcare professionals, and to find ways of preventing re-infection.Conclusions: There is an unmet need in improving diagnosis and treatment as well as awareness to NTM- pd.FootnotesCite this article as: European Respiratory Journal 2020; 56: Suppl. 64, 3338.This abstract was presented at the 2020 ERS International Congress, in session “Respiratory viruses in the "pre COVID-19" era”.This is an ERS International Congress abstract. No full-text version is available. Further material to accompany this abstract may be available at www.ers-education.org (ERS member access only).